A new bipartisan committee’s working group will gather on Capitol Hill throughout the coming months to find ways to improve electronic health records, according to Senate health committee chairman Lamar Alexander (R-Tenn.) and ranking member Patty Murray (D-Wash.).

The group will work to find five or six ways to “make the failed promise of electronic health records something that physicians and providers look forward to instead of something they endure,” Murray said in an announcement.

All members of the Senate health committee are invited to be a part of the working group. Staff meetings begin this week, with participation from health IT professionals, industry experts and government agencies.

The working group’s goals include the following:

Help providers improve quality of care and patient safety.

Facilitate interoperability between EHR vendors.

Empower patients to engage in their own care through access to their health data.

Protect privacy and security of health information.

The working group isn’t the only way Alexander and Murray are pushing for change when it comes to EHRs.

IBM is taking its Watson artificial-intelligence technology into health care in a big way with industry partners, a pair of acquisitions and an ambitious agenda.

The initial three industry partners are Apple, Johnson & Johnson and Medtronic. On Monday afternoon, after the close of stock trading, IBM also announced it would buy two start-ups: Explorys, a spin-off from the Cleveland Clinic whose data on 50 million patients is used to spot patterns in diseases, treatments and outcomes; and Phytel, a Dallas maker of software to manage patient care and reduce readmission rates to hospitals.

The IBM plan, put simply, is that its Watson technology will be a cloud-based service that taps vast stores of health data and delivers tailored insights to hospitals, physicians, insurers, researchers and potentially even individual patients.

“We’re going to enable personalized health care on a huge scale,” said John E. Kelly, a senior vice president who oversees IBM’s research labs and new initiatives.

To date, IBM has done some individual projects using Watson technology with leading medical centers, including Memorial Sloan Kettering Cancer Center in New York, the University of Texas MD Anderson Cancer Center in Houston and the Cleveland Clinic. But the creation of the Watson Health unit, Mr. Kelly said, is an effort to apply the technology to the mainstream of health care.

The Watson Health announcement is also the latest in flurry of initiatives IBM has announced this year that include new corporate partnerships as well as moves in cloud computing, data analytics and Watson. They are evidence that IBM is intent on investing for future growth, and showing it is doing so, in a year when its financial performance is likely to lag.

IBM has reported disappointing earnings recently, and Virginia M. Rometty, IBM’s chief executive, has told industry analysts and investors that 2015 would be a transition year in which new growth businesses like Watson did not yet overcome the profit erosion in some of its traditional hardware and software products.

IBM’s broad vision of combining and analyzing health data from varied sources to improve care has been around for decades. But the company and its partners say that technology, economics and policy changes are coming together to improve the odds of making the IBM venture a workable reality. They point to improvements in artificial intelligence, low-cost cloud computing and health policy that will reward keeping patients healthy instead of the fee-for-service model in which more treatments and procedures mean more revenue.

“Forces in health care are aligning as never before,” said Sandra E. Peterson, a group worldwide chairman at Johnson & Johnson in charge of information technology and new wellness programs. “It could be a unique moment and something like this could have real legs.”

A focus of the Johnson & Johnson partnership with IBM will be improving patient care before and after knee and hip replacements. The company will apply Watson technology to data sources ranging from patient records to digital fitness devices and smartphone applications, which can monitor movement and vital signs. “It will allow us to do much more integrated, personalized care,” Ms. Peterson said.

Medtronic, a large medical equipment maker, wants to use data intelligently to treat diabetes patients beyond providing them with its glucose monitors and insulin pumps. Medtronic devices are already digital and produce a lot of data, but the company plans to use the Watson software to spot patients trending toward trouble and automatically adjust insulin doses and send alerts to care providers and the patients themselves.

“The goal is dynamic, personalized care plans so you can delay or stop the progression of diabetes,” said Hooman Hakami, executive vice president in charge of Medtronic’s diabetes group.

Apple is increasingly a major supplier of health sensors, from iPhone apps to the Apple Watch. Its recently introduced HealthKit and ResearchKit software make it easier for applications and researchers to harvest health information from millions of owners of Apple products, with their permission. That data can now be plugged into Watson. “We want to be the analytics brains behind HealthKit and ResearchKit,” Mr. Kelly said.

The IBM initiative raises questions on how data is handled and about privacy. Mr. Kelly said the data scrutinized by Watson will typically be anonymized and often be read by Watson but not removed from hospital or health company data centers. “There will be no big, centralized database in the sky,” Mr. Kelly said.

Even critics of health information technology say the IBM effort holds promise. “If that future when all this stuff works is going to become real, then having some of the key players come together is the only way it’s going to happen,” said Dr. Robert M. Wachter, a professor at the University of California, San Francisco medical school and author of “The Digital Doctor: Hope, Hype and Harm at the Dawn of Medicine’s Computer Age.” “This could be a pretty important step along the way.”

The Centers for Medicare & Medicaid Services has paid out nearly $30 billion in meaningful use incentives for hospitals and physicians to adopt EHRs. But some members of Congress, the body that approved those funds, are about as frustrated with EHRs as doctors and nurses.

“The evidence suggests these goals haven’t been reached,” said Senator Lamar Alexander, R-Tennessee, in a long EHR hearing followed by Erin McCann, Healthcare IT News managing editor.

Robert Wergin, MD, president of the American Academy of Family Physicians, said that family physicians are having a difficult time with the Stage 2 meaningful use requirements. The “time, expense and effort it takes makes it not worth while,” said Wergin. Indeed, some 55 percent of physicians surveyed plan on skipping Stage 2 all together.

“The issue of interoperability between electronic health records represents one of the most complex challenges facing the healthcare community,” said Wergin. The government “must step up efforts to require interoperability.”

A central problem, as McCann wrote, is that “Vendors have no incentive to share data and create more interoperable systems. There’s the question of data ownership here. There’s the question of competition. And there’s the question of standards, or lack thereof.”

“The vendors are siloed,” as Wergin said. “And you’re held somewhat hostage by the vendor you have.”

President Barack Obama’s Precision Medicine initiative hinges on gathering data from millions of individuals, but there are challenges the healthcare industry will face when it comes to collecting that information, says Niam Yaraghi, a fellow in the Brookings Institution’s Center for Technology Innovation.

Interoperability and security are two issues plaguing the industry, which also will play a role in Obama’s initiative, the aim of which is to increase the use of personalized information in healthcare

“To succeed, the Precision Medicine initiative has to either overcome the lack of interoperability problem in the nation’s health IT system or to find a way around it,” he writes.

For now, those working on the project should get access to what medical records they can and then work with providers and vendors on gaining access to future records, Yaraghi says.

When it comes to privacy for precision medicine, problems the administration will face include setting up secure technologies and privacy regulations surrounding the project so that information cannot be accessed by malicious actors. In addition, when researchers begin to analyze data, they may uncover information patients do not want shared or known.

To ensure safety of information privacy, audits should be conducted by third parties, Yaraghi says. And if a data breach occurs, a patient’s participation in the study should be canceled and the patient should get financial compensation.

“The Precision Medicine initiative is a ‘Big Hairy Audacious Goal’ with exciting promises and priceless implications,” he writes. “[H]owever, to believe in its future success, it should first propose a plan to resolve the above mentioned patient privacy concerns and health IT challenges.”

Deprivation has a way of making you feel excessively thankful for even the most meager offering. Yoni Maisel, a reflective patient and patient advocate with a rare genetic primary immune deficiency disorder, conveyed just this sense of disproportionate gratitude in an exuberant recent piece describing the impact of technology on his life.

Inspired by Eric Topol’s new book, The Patient Will See You Now, highlighting the power of the smartphone (my WSJ review here), Maisel went out and bought one. He then received (on his smartphone) an email from a doctor who had read about the symptoms Maisel had previously described on his blog related to a second, extremely rare disease he has (Sweet’s Syndrome), and thought she had a patient with a similar condition. After viewing photos of skin lesions Maisel took (with his smartphone) and shared with her (with his smartphone), the doctor was reportedly convinced her patient had Sweet’s Syndrome as well.

Maisel tweeted enthusiastically that Topol’s book (and, implicitly, the technology he champions) “Just Played Part in Dx of 1in 1Million #RareDisease.”

A somewhat different reaction was shared by Rick Valencia, Head of Qualcomm Life, who commented, via Twitter; “Shocking that buying a smartphone and sending a pic considered a tech breakthrough. #onlyinhealthcare”

On the one hand, of course, Maisel’s story obviously represents a terrific outcome for the newly-diagnosed patient, and – precisely as Maisel and Topol emphasize – highlights one way smartphone technology can improve medical care.

At the same time, Maisel’s joy, paradoxically, also reminds us of a deep flaw in the system, as Valencia’s comment begins to suggest. At issue: poor data sharing, a medical tragedy of underappreciated dimension. Valuable, even vital information often remains uncaptured, unanalyzed, and, especially, unshared.

The human consequences associated with poor data sharing were poignantly described by Seth Mnookin in his New Yorker article last year profiling a family whose son, Bertrand was born with a mysterious disease that eluded rapid identification. The family (like an estimated 25% of patients with unknown genetic disorders) was able to obtain a diagnosis by exome sequencing, yet struggled to locate others with a similar condition. It wasn’t until the father, Matt Might, blogged about it – and had the story picked up by Reddit and others – that he was able to locate others with the disease.

The key point is that the networks afforded by Reddit were fundamentally richer than any medical dataset. If someone – the father in the Mnookin story, the doctor in Maisel’s story – wants to find others who have similar genetics and phenotypes, they need to rely on public, non-medically-specific networks because these networks, while not purpose-built, are nevertheless far denser, and often, it seems, the best option available. The issue this speaks to is what I’ve heard referred to as Matticalfe’s Law, named by physician and informaticist John Mattison to suggest a variant of the familiar Metcalfe’s Law. (Disclosure: while I’ve no business relationship with Mattison, he is co-chair of the Global Alliance for Genetics and Health eHealth working group, on which I serve. Also, to offer my usual reminder/disclosure, I am CMO at DNAnexus, a company that makes a cloud-based platform for genomic data management and collaboration).

Metcalfe’s Law is the idea that the value of a network is proportional to the square of the number of participants – i.e. adding more people to a network increases value not linearly, but exponentially. It’s a key principle underlying the concept (and power) of networks (though not without its critics – see here).

Matticalfe Law, as Mattison explains it, is that “the value of data silos is very limited, but when deployed in aggregate yields a law of accelerating returns rather than a law of diminishing returns, similar to the network effect of Metcalfe’s law.” Mattison adds he “hybridized the eponym to distinguish it from the classical network effect, hence Matticalfe’s Law.”

One implication here is that if every cancer center, every medical center, every rare disease center shared their data fully, then as a whole, these data would be profoundly more valuable and useful. The chances that a patient with an unusual mutation and phenotype would have someone like them, somewhere in the world, would be so much higher.

So why isn’t this done?

For starters, most hospitals – even leading centers — are struggling to meaningfully organize the genetic and phenotypic data of their own patients in a fashion that can truly inform clinical decision making, as I discussed late last year; thus, you can argue that it’s hard to share with others what you can barely grasp yourself.

A second factor, of course is privacy; medical centers typically emphasize the special nature of medical data, and express concern about the fate of rich information in a shared dataset.

Yet, many experts are skeptical that this represents the true (or only) explanation; as Mnookin writes,

‘If you want to be charitable, you can say there’s just a lack of awareness’ about what kind of sharing is permissible, Kohane said. ‘If you want to be uncharitable, you can say that researchers use that concern about privacy as a shield by which they can actually hide their more selfish motivations.’”

In other words, even if top centers were able to collect and usefully organize phenotypic and genetic data on patients, would they share most of this information or silo it?

I’m not sure I know anyone who would bet against “silo.”

Whether consciously recognized or not, these data are perceived as representing a competitive advantage for the institutions and individuals who generated them (and notably, in this context, the “generating individual” is understood to be the researcher, not the patient!).

Leading cancer centers (for example) have more data than most other hospitals and practices – even though their total share of cancer patients is relatively small, as something like 85% of cancer care occurs in the community. In a world without rich data sharing, today’s top cancer centers enjoy a distinct competitive advantage; their datasets (and more broadly, their experience sets), while individually small in the absolute sense, are large compared to most community hospitals and practices. However, in a world with richer data sharing, these leading centers would arguably lose much of their competitive advantage – even though the global quality of cancer care would likely go up, driven by the knowledge the richer dataset would provide. Thus, it’s perhaps not surprising that most leading cancer centers talk up data sharing far more than they engage in it – at least at anything like the rich level that would be ideal to advance medical science. (Of course, there are encouraging exceptions to this generalization.)

The need for rich data sharing to accelerate what Andy Grove calls “knowledge turns” (link here – ironically but not surprisingly, preview only; JAMA has not made this open access) has both frustrated and motivated patient advocates such as Chordoma Foundation co-founder Josh Sommer, who has worked tirelessly to change the system (see here, also here).

Nevertheless, both in the context of scientific research and in the context of patient care, the unfortunate truth is that while it’s fashionable to profess commitment to data sharing, many hospitals, and many researchers, are reluctant to part with data.

“What if you owned a business and one of your competitors said: ‘I would like a list of all your customers, as well as information on their demographics and health history.’ You would likely say, there is no way I’m giving you a list of my customers.

Well in the case of healthcare, customers = patients.”

Instead, the idea of the moment seems to be “federated” datasets – the idea that everyone can keep their own datasets, but query engines could specifically extract the exact, relatively limited data they need, affording, it’s suggested, many of the benefits of data pooling but without incurring many of the risks. There’s a conspicuous “assume a can opener” quality to this strategy, but it’s worth watching because some very smart people (and organizations) are working intensively on this — and because it might be the best we can hope for.

One alternative to this idea is that patients could contribute their own data into datasets, which could be used for the common good. This is obviously attractive conceptually, but the challenge is more pragmatic: while some patients are both motivated and technologically adept, most patients struggle exhaustively just to get a handle on all of their own medical records, and most are unlikely to have the time, inclination, and ability to share – beneficial as this would be.

An idea I’ve been thinking about (see here, here) is the notion of the data-inhaling clinic, medical centers built around the premise of rich data collection and sharing, and offering genuine interoperability. Patients choosing to seek care here would explicitly want their data shared, and in turn would benefit from the data sharing of others. Consent to share data (which could always be withdrawn) would be a foundational condition of care at these centers, and a reason enlightened patients would seek treatment there (in addition to the empathetic care, which as always remains elemental). Institutions subscribing to this philosophy would not need to have the same owner, nor even the same EMR – just the same commitment to rich and complete data sharing among participating institutions. (Sharing data only among participants seems necessary, at least initially, to avoid free-rider problem; the point is that any organizations willing to share appropriately-consented data in substantial fashion could belong to the network.)

While some patients might not like this approach, those in favor would vote with their feet, and I can imagine that the rich, consented dataset the subscribing, data-inhaling clinics would build would rapidly exceed those available elsewhere in the world. Perhaps at this point, holdout institutions – which I imagine would include top academic medical centers – would finally relent and join as well.

The aspiration would be that in a world of rich data sharing, making diagnoses based on the combination of unusual symptoms and unusual genetics wouldn’t be exceptional, or even tweet-worthy; rather it would be — and should be — the expectation.

The five Republican senators who previously called for a “reboot” of the meaningful use program are now looking at the Office of the National Coordinator for Health IT’s broader efforts and citing a lack of interoperability among the reasons that the stimulus has not worked to their satisfaction.

“We have been candid about the key reason for the lackluster performance of this stimulus program: the lack of progress toward interoperability,” GOP Sens. John Thune of South Dakota, Lamar Alexander of Tennessee, Pat Roberts of Kansas, Richard Burr of North Carolina and Mike Enzi of Wyoming wrote in a Health Affairs article. “Countless electronic health record vendors, hospital leaders, physicians, researchers, and thought leaders have told us time and again that interoperability is necessary to achieve the promise of a more efficient health system for patients, providers, and taxpayers.”

The senators added that in the six years since the HITECH Act was passed, there has been inconclusive evidence that the legislation is working to achieve its goals of increasing efficiency, reducing costs, and improving care quality.

Their article comes as ONC is currently accepting public comments on the plan, dubbed Connecting Health and Care for the Nation: A Shared Nationwide Interoperability Roadmap Draft Version 1.0, and that comments period will be open until April 3, 2015.

ONC chief Karen DeSalvo, MD, has called the interoperability roadmap and the accompanying Federal Health IT Strategic plan a new horizon for “HIT beyond EHRs” and “policy levers beyond meaningful use.”

DeSalvo has also explained that several actions steps will be needed to reach nationwide interoperability, as Healthcare IT News Editor at large Bernie Monegain reported, and the work will progress along three pathways: standards, incentives to motivate the use of those standards, and a trusted environment for collecting and sharing health information.

ONC has been criticized for the 10-year duration during which it intends to work toward not just interoperable EHRs but the promise of a learning health system built on top of digitized infrastructure — with at least one hospital CIO, Paul Merrywell of Mountain States Health Alliance, likening the timeframe to how long it took to land a man on the moon.

And while Merrywell said last summer during an HIT Policy Committee meeting that he is encouraged by ONC’s interoperability roadmap, he added that “we’re never going to get to interoperability without standards that can be universally applied.”

In addition to standards, the senators called for much more detail than ONC has thus far provided.

“Instead of offering specific objectives, deadlines, and action items, ONC’s roadmap falls short on the nitty-gritty technology specifics that vendors and providers need when developing IT products,” the senators wrote. “We are left with many outstanding questions about how to achieve interoperability and how to address the cost, oversight, privacy, and sustainability of the meaningful use program.”

U.S. Surgeon General Vice Admiral Vivek H. Murthy meets with Dr. Jonathan Woodson, assistant secretary of Defense for Health Affairs, at the Pentagon on March 11, 2015, to discuss the Military Health System’s critical role in support of the National Health Strategy.

eaders of the Military Health System met with the newly confirmed U.S. Surgeon General at the Pentagon on March 11. Dr. Jonathan Woodson, assistant secretary of Defense for Health Affairs, and Air Force Lt. Gen. Douglas Robb, director of the Defense Health Agency, discussed military health and the MHS’ critical role in support of the National Health Strategy in their first meeting with Vice Admiral Vivek H. Murthy since his confirmation by the U.S. Senate in December 2014.

“Our partnership with the Public Health Service has been instrumental in helping the Department and the Military Health System achieve its mission,” said Woodson. “Public Health Service officers have worked side-by-side with us in our military hospitals and clinics, in our laboratories, in support of our global health mission, and as part of the medical team serving all of our beneficiaries. One of the most prominent areas where we have collaborated is on implementation of health prevention and wellness initiatives. I look forward to continuing to work in close partnership with Admiral Murthy to promote health and healthy behaviors for our force and all of our beneficiaries.”

The meeting gave the leaders the important opportunity to discuss the Military Health System as a strategic asset in support of national security objectives, and the important role DoD plays in supporting the National Health Strategy, especially in areas such as reducing obesity and tobacco use.

“Our military medical personnel are all members of the larger federal team focused on improving the health and wellness of the entire country,” said Robb. “I am privileged to have Public Health Service officers working with me in the Defense Health Agency on a number of critical health matters. We’re one team engaged in one fight. It was a great opportunity to show Admiral Murthy everything we have to offer, and to express our appreciation for the talented people the Public Health Service shares with us.”